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Executive Summary

A new guidance statement from American Society of Clinical Oncology and the American Academy of Hospice and Palliative Medicine defines high-quality primary palliative care delivery in medical oncology. Some recommendations include the following:

All symptoms should be assessed and managed at a basic level.

Oncology practices should be able to describe the difference between palliative care and hospice to patients.

Oncology practices should refer patients with an expected survival of less than three months or poor performance status to hospice.

A new guidance statement to define high-quality primary palliative care delivery in medical oncology has been developed by the American Society of Clinical Oncology (ASCO) and the American Academy of Hospice and Palliative Medicine (AAHPM).1

“Our hope is that by reviewing our palliative care service items, oncology clinic personnel will have a greater understanding of what palliative care truly looks like,” says lead author Kathleen Bickel, MD, MPhil. Bickel is an assistant professor of medicine at White River Junction Veterans Affairs Medical Center’s Geisel School of Medicine at Dartmouth in Hanover, NH.

Palliative care “has never quite been broken down or spelled out in such a specific way as we tried to do with our project,” says Bickel. “It will be interesting to see how people respond.”

Joe Rotella, MD, MBA, HMDC, FAAHPM, the AAHPM’s chief medical officer, says the following are the primary challenges in delivery of quality palliative care in the oncology practice setting:

perceived lack of time and inadequate training to have uncomfortable conversations with patients,

a culture in our society of fighting cancer at all costs, that inappropriately equates a comfort or quality-of-life focus of care as giving up, and

The guidance represents a consensus opinion on which components of palliative care for cancer patients are important, feasible, and within the scope of care for medical oncology practices to provide without routinely involving a specialized palliative care team, according to Rotella.

“This is an opportunity for every oncology practice to look at how it cares for patients, and to make sure it pays attention to their palliative care needs,” he says.

Enforcing “moral imperative”

Salimah H. Meghani, PhD, MBE, RN, FAAN, an associate professor at University of Pennsylvania’s Department of Biobehavioral Health Sciences in Philadelphia, sees the recommendations as “creating and enforcing a moral imperative to move beyond the cure-oriented mindset in treating patients with advanced life-limiting cancer.” Meghani is also an associate fellow at the University’s Center for Bioethics, and served on the Institute of Medicine committee which developed the 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.

Some key recommendations include the following:

that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain,

that oncology practices should be able to describe the difference between palliative care and hospice to patients, and

that oncology practices should refer patients with an expected survival of less than three months or poor performance status to hospice.

“These are simple recommendations, and do not imply that oncologists do not know how to treat nausea or dyspnea,” says Meghani, adding that the recommendations mirror those of the 2014 IOM report.

“The report called for delivery of palliative care by professionals who are not necessarily palliative care specialists but are in primary or disease-oriented specialties, and frequently work with patients with advanced illnesses,” notes Meghani. Similarly, the ASCO/AAHPM guidance calls for high-quality primary palliative care delivered by medical oncology clinicians.

However, “the physician does not, and probably should not, do all of the primary palliative care delivery,” notes Bickel. “Our hope is to get practices thinking more about true team-based care.”

Practices associated with large cancer centers typically have a wide range of resources and can likely easily provide most palliative care services. “This might require a bit more creativity for smaller practices with less resources,” says Bickel.

Education of both medical professionals and patients continues to be a major part of improving palliative care delivery, according to Bickel. “We are not talking about hospice here,” she says. “This is just basic, compassionate patient care. It is not very complicated.”

Not enough specialists

In 2012, the ASCO recommended the integration of palliative care into routine cancer care.2 “Previously in routine cancer care, palliative care had been sporadically offered at times of great symptom distress or when the patient was close to death,” says Margaret Quinn Rosenzweig, PhD, FNP-C, AOCNP, FAAN, associate professor at University of Pittsburgh School of Nursing.

Rosenzweig adds, “Probably the most important issue is that there are not enough specialists in palliative care to meet this recommendation.”

Having advanced practice nurses provide high-quality palliative care is one answer. “Resources can be directed toward nursing to help to ensure that each patient in need of palliative care has access to this specialty,” Rosenzweig suggests.

To ensure that every patient with a life-limiting illness and all patients with metastatic cancer receive palliative care, says Rosenzweig, providers who are not specialists must be able to implement a basic level of palliative care assessment and intervention.

“This means that physicians, nurse practitioners, physician assistants, and registered nurses must be able to provide at least a basic level of palliative care assessment and intervention,” she says.

Patients pay heavy price

Meghani suggests that bioethicists use narratives and stories to demonstrate to providers the consequences of decisions such as late referrals to hospice or lack of honest communication about prognosis.

“Often, patients and families pay a hefty price in terms of loss of quality of life, loss of financial assets, and caregiver exhaustion,” she notes. “This creates a burden for patients and families during very vulnerable times in their lives.”

Meghani acknowledges that instruments to accurately assess prognosis and life expectancy are limited, but says prognostic limitations have also been used as “a crutch” by clinicians to avoid engaging in difficult end-of-life discussions.

“Clear clinical guidelines about referral and consistent use of a validated prognostication tool is a step in the right direction,” says Meghani.